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Abstract
Parkinsons disease (PD) is the second most common neurodegenerative disorder, characterized by a variety of motor and non-motor symptoms. As the disease is incurable, treatment is palliative in nature, focusing on symptom management and quality of life. Although neurologists apply a basic palliative approach in their treatment of PD, little is known about unmet palliative needs of PD patients that may be better met by specialist palliative care. The purpose of this study is to determine the unmet palliative needs of PD patients and to understand barriers and facilitators of palliative service use. This study aims: 1) to determine the unmet palliative needs of PD patients, and to examine patient-physician agreement on need; 2) to understand how unmet palliative needs affect PD patient quality of life; 3) to understand PD patients perceptions of palliative need; and 4) to examine physician-perceived costs and benefits of referring PD patients to palliative care using Social Exchange Theory.In this mixed-methods study, PD patients (n=49) and neurologists (n=62) completed an online survey on the palliative needs of PD patients generally unmet by standard neurological care. Neurologists were also asked about their palliative referral practices and their attitudes towards palliative care. Twenty-three PD patients were also interviewed in person to better understand patient experiences of palliative need and other factors affecting the quality of care. Nearly all patients experienced some unmet palliative need. Neurologists reported spiritual needs as most unmet while patients emphasized gaps in psychological need. Physical and psychological unmet needs significantly predicted patient quality of life. Patients noted education and care coordination needs as having pervasive effects on the quality of care, and support groups and spiritual care were emphasized as major supports in coping. Patients also reported using their physicians for medication management alone, potentially limiting the psychosocial benefits they may receive from neurology clinics. Perceived pros and cons of palliative care were predictive of physician referrals, highlighting opportunities for education to improve use of the services. Findings from the study are discussed in the context of existing literature and recommendations are made for clinical care and education programs.